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Health

Prior blog posts I've written about experiences with health challenges appear to have been helpful to others facing similar challenges. The following is a partial historical recounting of some problems I've experienced with shoulder pain, and some of the medical treatments (including surgery) that have been contemplated or applied thus far. I am not a medical professional, and nothing herein should be construed as professional medical advice. I am simply recording my own experience, in case it is of benefit to others.

History of Present Illness

Sometime in May, I noticed that my left shoulder was becoming increasingly painful, and its range of motion was gradually decreasing. I can't think of any particular event that triggered or exacerbated the pain, but it suspect the problem was impacted by the combination of a significant increase in stress and a significant decrease of exercise during that period. I generally tend to avoid seeking medical help for problems, but by the end of June, the pain was so intense that I finally decided to see a doctor.

Diagnosis

For the diagnosis and treatment of past orthopedic problems, I've enjoyed great medical care and attentive service with the physicians and staff at OrthoWashington (in Kirkland, WA), so I scheduled an appointment with Dr. Jason Boyer. After the examination, he said I might have a rotator cuff tear, and I could either get a magnetic resonance imaging (MRI) test to confirm or disconfirm the hypothesis, or try physical therapy. Given that physical therapy successfully resolved a similar problem I had with my right shoulder about 10 years ago, I decided to pursue that route, hoping to avoid the expense of an MRI and a more invasive surgical intervention.

Physical Therapy, Round One

For the next 3 weeks, I worked with Julie Lampson at Olympic Physical Therapy in Bellevue (a block away from the company at which I've been consulting all summer). Julie and her colleagues were very helpful in teaching me exercises designed to increase the range of motion in my shoulder without increasing the pain. Julie also suggested some ergonomic improvements to my workstation - more supportive seating and an external monitor, to improve my posture during long hours of computer work - which the company was very supportive in accommodating. Despite these changes, and diligently practicing the shoulder and posture-improving exercises between sessions, the trend of decreased range of motion and increasing pain continued. Eventually, Julie recommended discontinuing further physical therapy until or unless my shoulder inflammation could be brought under control.

MRI

I had an MRI performed on July 31. On the positive side, OrthoWashington uses an open MRI machine rather than the machines with enclosed tubes into which I've been inserted during past MRI procedures. On the downside, it was a rather painful procedure. The 45-minute imaging process requiring my shoulder to be virtually locked down into a position that became uncomfortable within 10 minutes and painful within 20. I've had lots of opportunity to use the pain scale over the last several weeks, and I would rate my pain at a 5 by the time the test was done. Fortunately, applying ice immediately after the MRI brought my pain down to a 1 or 2 very quickly.

The evaluation of the MRI of "Coronal T1, T2 and STIR, sagittal T2, axial STIR and axial T2" reported the following findings [with links inserted by me]:

ROTATOR CUFF: There is a high-grade linear appearing partial-thickness articular sided tear at the anterior attachment site of the supraspinatus tendon. The tear measures approximately 8 mm in transverse diameter and represents partial-thickness articular sided avulsion of the tendon at the level of attachment to the anterior footprint. This tear appears high-grade in nature but some of the bursal sided fibers remain intact without evidence of a complete/full-thickness disruption. The subscapularis and teres minor tendons are intact.

MUSCLES: Cuff musculature is normal with no fatty atrophy or edema.

BICEPS: Normal in morphology and position. There is fluid within the tendon sheath suggesting mild tenosynovitis.

ACROMION / AC JOINT: The AC joint images normal alignment with no significant arthrosis. There is a type II acromium. No subacromial enthesiopathic spurring. No thickening of the coracoacromial ligament.

GLENOHUMERAL JOINT / LABRUM: There is a type II SLAP lesion with fluid signal extending into the substance of the superior labrum with undermining of the long head biceps anchor, reference images 8 and 9 of series 4592.

BONE MARROW: No occult fracture or bone contusion noted.

IMPRESSION:

There is a focal high-grade partial-thickness articular sided avulsion of the supraspinatus tendon at the anterior attachment site.

Findings are suspicious for a type II SLAP lesion.

Mild subacromial subdeltoid bursitis.

Mild tenosynovitis long head biceps tendon sheath. Long head biceps tendon is otherwise normal.

Type II acromium is present which can be associated with the clinical syndrome of impingement. There are no subacromial enthesiopathic spurs noted.

Given that physical therapy had proved ineffective at resolving my current shoulder problem, Dr. Boyer recommended diagnostic operative arthroscopy to examine the left shoulder, with possible surgical intervention including biceps tenodesis (detaching the biceps tendon from the shoulder socket and reattaching it to the arm bone), supraspinatus rotator cuff repair and/or superior labrum anterior to posterior (aka SLAP) rotator cuff repair. I agreed, and we scheduled the surgery for August 16.

Surgery

During the pre-operative consultations, I informed the physicians and staff of two possibly pertinent aspects to the arthroscopic knee surgery I had in Illinois during 2002. The first occurred in the operating room, after the initial dose of anesthesia, when they asked me to count backwards from 100; as I proceeded through the 90s into the 80s, I could sense a bit of a scramble in the operating room, but I don't remember reaching the 70s, so the dose of anesthesia eventually achieved adequate levels and I drifted off to sleep. The second occurred in the post-operative recovery room, when I awoke to the most intense level of pain I've ever experienced; I've never experienced [intentional] torture, but I believe I got a small taste of just how mind-altering intense pain can be, prior to the installation of a morphine drip pump (which seemed to take an eternity at the time). What started out as a routine out-patient procedure turned into an overnight stay, but by the next day, the pain was being effectively managed.

This time around, the physicians and staff were prepared, and I don't remember counting down beyond 95. I was later told that they ended up using approximately twice the amount of anesthesia that would typically be expected for a person of my size. In the post-operative recovery room, I again woke up to intense pain; if the pain immediately following knee surgery was a 10, I would rate the pain after shoulder surgery an 8; once again, the staff here seemed better prepared to respond to this development, although it still subjectively seemed like another interminable period of intense pain. Eventually, my pain was brought under control, and I was able to be discharged home. [Aside: I highly recommend the recent RadioLab episode, "Inside Ouch!", exploring the art & science of developing and applying pain scales.]

During the followup visit 4 days later, Dr. Boyer told me that during his initial arthroscopic examination of my shoulder, the rotator cuff tear did not appear as significant as the MRI report had earlier suggested, and did not exhibit any evidence of recent trauma (i.e., the tear had likely been there for quite some time). He also noticed that even under anesthesia, my shoulder was extremely stiff. Recovery time - and the delay of subsequent rehabilitative physical therapy - would have been significantly increased if he had proceeded to repair the rotator cuff. Given his concern about the onset or exacerbation of frozen shoulder syndrome, and the importance of getting my shoulder moving again as early as possible, he decided it would be best to perform the biceps tenodesis and forego the rotator cuff repair. FWIW, an article in the March 2011 issue of the Journal of Shoulder and Elbow Surgery, entitled Superior labral tears: repair versus biceps tenodesis [also available here], provides corroboration for this decision.

I'll include a few arthroscopic images below [clicking on any image will bring up a window of a larger version of the image]:

I set an alarm to wake me up to take the Percocet every 4 hours for the first few days. Around day 4, I tried sleeping through the night after taking the Percocet at 10pm, and awoke to intense pain shortly after 4am, so I continued using an alarm to stay medicated on schedule. I also found the maximum recommended dose of stool softener was not effectively relieving my constipation (a common side effect of the Oxycodone), so I increased the dose by one tablet daily, but spread them out over the course of each day.

When I had my stitches removed approximately one week after surgery, I was told that taking Percocet every 4 hours was putting me at risk of Acetaminophen overdose, and so was advised to shift to taking the Percocet at most every 6 hours, and continue using Oxycodone as necessary to fill in any gaps.

During week 2, my prescription of Percocet ran out, and I started substituting
Oxycodone and Acetaminophen. Toward the end of the week, I started experimenting with 1 (vs. 2)
Oxycodone every 6 hours during the day (but continuing with 2 every 6 hours at night). My Naprosyn was also running
low, so I started taking 3 Ibuprofen every 6 hours during the day, and
Naprosyn only at night. Dr. Boyer had warned me that taking non-steroidal anti-inflammatory drugs (like Ibuprofen and Naprosyn) may prolong the bone-healing process, but I decided pain reduction was a higher priority.

During week 3, I scaled back my nighttime medication to 1 Oxycodone every 6 hours, and started taking 2 Vicodin (Hydrocodone + Acetaminophen) and 3 Ibuprofen every 6 hours during the day. After a few days, I downshifted to 1 Vicodin + 1 Acetaminophen (plus the 3 Ibuprofen) every 6 hours during the day. Now in week 4, I've eliminated all narcotics during the day, and am planning to substitute 1 Vicodin for the 1 Oxycodone at night, hopefully eliminating the narcotics altogether by the end of the week.

It feels good to emerge from the persistent though variable "brain fog" that has affected my thinking (and doing) over the past several weeks. My power of concentration was diminished, as was my ability (or willingness?) to think deeply or broadly on the scales I typically like operate on. I haven't felt very much like reading or writing prose (or poetry) ... but, oddly, I have felt very much like reading and writing computer code, and although I may be self-deluded, I believe I've been fairly effective in programming a fairly effective graphical user interface for labeling results returned by a search engine operating in the medical domain [about which I still hope to write more in the not-too-distant future].

Throughout this period, I have also made use of non-pharmacological tools. I was - and still am - icing down my shoulder religiously for 30 minutes every 2 hours with an oversized ColPaC reusable cooling pack borrowed from a friend who had successfully worked through some shoulder problems of her own. I have also found the DenTek Triple Clean Floss Picks to very helpful in maintaining oral hygiene with one hand. I have been sleeping in a Barcalounger in my home office throughout this period, which provides more support and protection while my shoulder is somewhat vulnerable ... and has made my medication schedule less disruptive for my wife.

And while I hope that my current bout with shoulder pain does not (or, ultimately, will not) qualify as chronic pain, I have found relief and respite in Jon Kabat-Zinn's audiobook on Mindfulness Meditation for Pain Relief: Guided Practices for Reclaiming Your Body and Your Life. The mind-body stress reduction program promotes awareness, attention to and acceptance of pain: tuning in to the body rather than attempting to distract the mind from what is going on in the body. I believe this approach is applicable to other challenges involving "undesirable" mind-body states (e.g., fear, anger or sadness), and hope to continue the practice(s) regardless of whether and when my shoulder pain subsides.

Physical Therapy, Round Two

About 2 weeks after surgery, I resumed physical therapy. Due to my impending return to full-time teaching at University of Washington Bothell in the fall quarter, I decided to switch to Flex Physical Therapy, which is about a mile from campus. At Flex, I've been working with Camille Porter, and although I'm still only doing simple pendulum-style exercises, similar to what Julie at Olympic P/T had shown me, Camille has started maneuvering my shoulder through gentle stretches, and has helped me regain considerable range of motion during (and between) the three sessions I've had there so far.

Prognosis

It's still too early to tell how much range of motion I'll eventually recover in my shoulder. I also can't say for sure yet how much my pain has been reduced, although during the day, even without the aid of prescription pain medication, it seems relatively minimal (except when I'm pushing toward the edges of my range during exercise).

I've heard from numerous other people that the key to successful shoulder rehabilitation is dedication to the physical therapy exercises, and so I have been practicing 5-10 rounds throughout each day. I hope to maintain this dedication once the school year starts, though my past experience has been that many important things - that are not directly related to classes - tend to fall by the wayside once classes begin. Pain, however, is a powerful motivator, so I hope to continue making good progress on restoring full functionality of my shoulder.

"Biologic medicine" treatments all engage the body in healing itself, typically involving the extraction, manipulation and re-injection of the patient's own blood or other bodily fluid. Regenokine treatment involves withdrawing a small sample of blood from the patient, heating it and then spinning it in a centrifuge to separate the constituent elements; the resulting yellow colored middle layer is then extracted and injected into the patient's problem area (e.g., the knee). PRP involves withdrawing blood and spinning it in a centrifuge, but does not involve heating, and - as the name suggests - the platelet-rich layer is extracted for injection. Bone marrow injections, involving stem cells, use a similar approach.

Unfortunately, the article reports that PRP, Regenokine and other "biologic medicine" treatments face special challenges in securing FDA approval:

The reason Kobe, A-Rod, and other athletes travel to Germany for their biologic treatments involves a vague FDA regulation that mandates that all human tissues (such as blood and bone marrow) can only be "minimally manipulated," or else they are classified as a drug and subject to much stricter governmental regulations. The problem, of course, is figuring out what "minimal" means in the context of biologics. Can the blood be heated to a higher temperature, as with Regenokine? Spun in a centrifuge? Can certain proteins be filtered out? Nobody knows the answer to these questions, and most American doctors are unwilling to risk the ire of regulators.

Consider an influential 2002 trial that compared arthroscopic surgery for knee osteoarthritis to a sham surgery, in which people were randomly assigned to have their knee cut open but without any additional treatment. (The surgeon who performed all the operations was the orthopedic specialist for an NBA team.) The data was clear: there was no measurable difference between those who received the real surgery and those who received the fake one.

As I've noted before in the PRP thread here on my blog, I'm not a medical expert, and I don't even follow the medical literature about PRP or other treatments with any regularity (I discovered this article because I follow @jonahlehrer on Twitter). I have enjoyed a complete recovery of functionality and nearly pain-free use of my elbow following PRP therapy. I like to think that there is a causal relationship in my personal experience - especially after the failure of several other treatments I tried - but as noted in Lehrer's article, more evidence is required to support any general conclusions on the effectiveness of the treatment. Meanwhile, I'm happy that to see PRP and other biologic treatments gain greater recognition and awareness.

After outlining the agenda and going around the room with brief introductions, we were treated to a remote keynote presentation by Paul Wicks, Director of Research & Development for PatientsLikeMe, a web service for compiling and provisioning patient-reported data for use in clinical trials. Paul offered an overview of the organization, highlighting some of its successes - including the discovery of the ineffectiveness of lithium for treating ALS and a more recent study revealing the positive user experiences of PatientsLikeMe users with epilepsy (55% of respondents consider PatientsLikeMe “moderately or very” helpful in learning about the type of seizures they experience) - and some of the challenges they face with respect to complexities (ontologies for symptoms, diagnoses and treatments) and incentives (ensuring that patients who give something get something).

The epilepsy study was paticularly interesting to me, as I've explored the web 2.0 service on behalf of my wife, who suffers from a few chronic conditions, and we were both struck (and personally disincentivized) by how narrowly structured the interface for describing conditions was. Paul acknowledged the regimentation of the data and interface, but noted that very little progress has been made in using natural language processing techniques to effectively extract useful data from less structured patient descriptions of symptoms, diagnoses or treatments, despite a great deal of effort.

PatientsLikeMe takes a very pragmatic approach to serving as an intermediary between patients' data and organizations that are willing to pay for that data, and so they focus on the sweet spot of data that can be relatively easily collected and provisioned. I was glad to hear about the epilepsy study, as it provides evidence that some patients are also reaping benefits from sharing their data. More generally, Paul was forthright and even evangelical about the business orientation of PatientsLikeMe (they are a for-profit corporation) and encouraged all workshop participants to think about sustainability - beyond the scope of government grants, business contracts or other relatively short term fors of support - in our own work.

After the keynote, we were partitioned into four working groups, all of which were tasked with defining a problem, designing a solution and reporting back to the broader group. The focused small group activity provided a context for stimulating discussions about a range of issues involving health, data, users and design, and the time constraints provided an impetus to keep things flowing toward a goal.

Methods for processing narrative versus numeric data

Depicting a diversity of opinions and experiences embedded within patient-generated information

Working with "lay" concepts and language and their alignment with complex medical issues

Being mindful with privacy-enhancing methods for data handling

I started off in Group 1, as I am interested in narrative data (the hard problem currently avoided by PatientsLikeMe), but it quickly became apparent that most of the other members in the group were primarily interested in the relatively short narratives that unfold on Twitter rather than the longer form patient narratives - such as one might find in blogs or online support forums - that I am primarily interested in.

During the report outs after breakout session 1, Group 3 described a persona, "Kelly", who was so remarkably similar to my wife, and her epic digestive health odyssey (which we described in a rather epic long form narrative blog post last August), that I decided to switch groups during the lunch break. Group 3 was particularly diverse - with two interaction designers, a graphics designer, an MD, an anthropologist, and a few folks (like me) with computer or information science backgrounds - and most of the members came were oustide of the traditional CSCW community (which itself is rather diverse). This diversity, coupled with the participation of people who could personally relate to the plight of the patient persona of "Kelly", enabled us to make good progress on our design for helping "Kelly".

The first - and in this case, probably final - design, "Health Tryst", was modeled - in both name and functionality - on Pinterest the increasingly popular online pinboard for "organizing and sharing the things you love", and included features for helping a patient with irritable bowel syndrome (IBS) navigate to relevant information and online support groups that might help her (or him) cope with a chronic condition, and to share these items with others.

I won't go into all the details of the design, as I believe the most valuable aspect of the process were the discussions that arose in the context of designing something that would be useful to a patient like "Kelly" suffering from IBS. The one feature I will highlight is a capability for Kelly to enter her own personal narrative using her own words, and the application would automatically seek out both synonyms used more commonly in the medical and/or patient support communities, as well as automatically link to resources associated with the themes and topics indicated in her narrative.

The unfolding design sketches and scenario offered effective props to keep those discussions focused and flowing. I'm not sure if anyone will carry the design forward, but suspect everyone involved came away with a keener awareness of some of the issues faced by "Kelly" and the medical providers and online community members who might help her.

There were several other interesting designs that emerged from the other groups. Unfortunately, I didn't take good notes on them, and so cannot report on the other designs. As was the case in our group, the designs served to spark interesting discussions within and across groups on issues relating to health, data and technology. However, I was struck by a general theme that emerged (for me), which I believe was particularly well summed up in a recent Forbes article by David Shaywitz on Medicine's Tech Future, from last week's Future Med 2020 conference:

there’s a huge gap between the way many technologists envision medical problems and the way problems are actually experienced by physicians and patients

Our group was extremely fortunate to have good representation of both physicians and patients, as well as technologists and designers. In fact, if I had to select the highlight of all the highlights of the entire day, it was the discovery of an incredibly powerful visualization of a medical history timeline created by Katie McCurdy to use as a prop in discussing her chronic conditions in an initial interview with yet another new physician, and the confirmation by the physician in our group that this was, indeed, exactly the kind of prop that he and other physicians would likely find extremely useful in such a context.

At the end of the workshop, we discussed a number of ways we might move forward in the future. I think one of the most effective ways to move discussions - and designs - forward will be to ensure broader participation from patient and physician communities, perhaps organizing or participating in workshops associated with some of these other communities.

I also think that health applications offer a perfect context within which to organize unconferences to bring together designers, developers, patients, physicians and business folk. I participated in a civic hacktivism project at Data Camp Seattle last February, but the Hacking 4 Health unconference in Palo Alto in September 2010 is a more relevant example that might be emulated to help move things forward. The Health Foo Camp this past July offers another unconference event that might be of interest to those who want to continue designing for health, and anyone interested in participatory design in the context of health might also want to check out the Society of Participatory Medicine and their blog, e-Patient.net.

The main conference is about to start, so I want to wrap this up. I am very grateful to the workshop organizers - Jina Huh and Andrea Hartzler - for bringing us all together and providing the perfect level of structure for promoting engaging discussions and designs on a topic that is of such great interest to all participants, and I look forward to future opportunities to practice designing for health.

Update: I'm including a couple of related blog posts, in case they help facilitate links across communities interested in this area (these and other related posts can be found in the Health category of this blog):

Dr. Ashish Jha, a professor at Harvard's School of Public Health and an author of this report as well says, "One of things that happened in Pittsburgh, in the pediatric ICU was that when the electronic system was put in, it really changed the way doctors and nurses interacted and the way they worked together. Physicians started spending a lot less time at the bedside and they were spending a lot more time staring at the computer screen, and interacting less with nurses and interacting less with patients. And there's a lot of information you pick up when you speak directly with people that when you go to purely electronic communication, you miss."

Two diametrically opposed possible explanations for the increased inattention of doctors to their human colleagues and customers (aka patients) came to mind:

the health information technology (HealthIT) systems are so well designed that doctors are becoming engrossed in the wealth of information newly available to them

the new HealthIT systems are so poorly designed that doctors are being needlessly distracted by confusing and unintuitive interfaces that require significant attention to navigate effectively.

After downloading and skimming the report [a pre-publication version of which is available as a free PDF], it appears that the latter explanation is most on point. Chapter 4 of the report, Opportunities to Build a Safer System for Health IT, includes observations, analysis and recommendations for usability, workflow and other human-computer interaction (HCI) issues involved in the design of effective Health IT systems. The report includes chapters on other topics involving information and technology (many of which incorporate elements of HCI), but it is encouraging to see such a strong human-centered focus on what is, by definition, a very human-centered domain.

Among the observations shared by the committee who authored the report is a strident call for usability as a mission-critical factor:

The committee expressed concerns that poor [Health IT] usability ... is one of the single greatest threats to patient safety. On the other hand, once improved, it can be an effective promoter of patient safety. [emphasis added]

Unfortunately, I don't currently have the time to dig more deeply into the report or the wealth of references it cites (I have 75 midterm Operating Systems exams to grade in the next 36 hours). However, in my [re]new[ed] role as educator, I will be teaching a class on HCI next quarter and am pondering how I might indulge my increasing interest in computer supported cooperative healthcare and find ways of focusing on healthcare issues as a stimulating and worthwhile problem domain for undergraduate students learning about HCI.

Having recently read a compelling NYTimes article on Why Science Majors Change Their Minds (It's Just So Darn Hard) - which emphasized the increasing importance of design, projects, problem solving and social service to motivate students studying Science, Technology, Engineering and Math (STEM) - I'm eager to put some of these ideas into practice.

[Update: The New York Times has a related article on doctor-computer interaction, which focuses on the distraction caused by highly engaging IT devices and services that are not designed specifically for healthcare: As Doctors Use More Devices, Potential for Distraction Grows (found via a post on Distraction at Josephine Ensign's "Medical Margins" Blog).]

[Update (August 2016): Since writing this post in 2011 about an odyssey that began in 2009, our hypothesis that Amy has fructose malabsorption has been disconfirmed. I hope the information in this post will still be of use to those who have similar hypotheses, or confirmed diagnoses. Amy still suffers from periodic episodes of extremely painful abdominal cramping and some of the other symptoms described in the original post, but our current hypothesis is that these are psychosomatic, the result of life-long challenges in processing emotions such as fear and anxiety (similar in some respects to the patterns described by Scott Strossel in My Age of Anxiety). Others experiencing an epic digestive health odyssey might benefit from considering potential psychological or emotional factors - in addition to the physiological factors - that may be contributing to the suffering. We hope the information here will be instrumental in ameliorating, or at least explaining, some of that suffering, or at least offer some consolation that you are not alone in the intense pain, desolation and desperation that often arises on such a journey.]

After over two years of intermittently intense suffering, an interminable series of medical consultations with a variety of healthcare professionals, and numerous indefinite diagnoses, a dietician recently helped us converge on a new explanation for my wife's digestive health problems: fructose malabsorption (FM). Having experienced some relief from recently starting an elimination diet, it appears that Amy's small intestine does not properly absorb fructose and its many polymerized forms such as fructans, raffinose and other Fermentable Oligo-, Di- and Mono-saccharides And Polyols (FODMAPs). These are the sugars contained in many fruits, vegetables and whole grains. As we currently understand her predicament, when she consumes foods or drinks - or even chews gum - containing moderate amounts of fructose, a fructose-glucose ratio greater than 1:1, or any amount of other FODMAPs, they are not absorbed in her small intestine but pass through to her large intestine. The unabsorbed sugars feed bacteria, and the resulting fermentation leads to a range of symptoms that have included varying degrees of abdominal pain (3 extreme episodes involved pain "worse than childbirth", vomiting and trips to the emergency room), bloating, belching, diarrhea, decreased appetite and visceral hypersensitivity. During this time, she has also experienced skin rashes, muscle and joint pain, dry eyes, dry mouth, fuzzy head, fatigue and depression, but at this point we're not sure whether or how these symptoms may be related to fructose malabsorption.

Candidates that have not yet been definitively ruled out include ileus, bowel obstruction and small intestinal bacterial overgrowth (SIBO) syndrome (in which the unabsorbed sugars are fermented in the small intestine rather than the large intestine). Mast cell activation syndrome (MCAS), a relatively unknown and ill-defined disorder in which mast cells precipitate an allergic overreaction (which in some people may include anaphylactic shock), is the most recent addition to the candidate list. Irritable Bowel Syndrome (IBS) is a much better known but not not much better understood disorder which has a high degree of symptom overlap with fructose malabsorption (and SIBO); we're note quite sure what to make of IBS, but Amy's IBS-related symptoms have significantly improved through the dietary management of fructose. Some of these conditions are suspected of being interrelated, and it may be the case that several of these diagnoses apply.

During a visit to Amy's gastroenterologist last Friday, he suggested that MCAS may be the genesis her FM/IBS symptoms - possibly triggered in response to an earlier gastrointestinal infection - and so she is preparing to add antihistamine and quercetin to her daily regimen to reduce the likelihood of future [over]activation. He also suggested that the rapid intestinal transit that was observed in an X-ray of her upper GI with small bowel follow-through may be a factor - fructose may not be absorbed in her small intestine because it simply isn't given enough time - and so he also recommended a daily dose of Imodium (Loperamide) to slow down the intestinal transit. I hope to have more to say about this trajectory in a future post.

Exploratory abdominal surgery was recommended by a few different specialists at earlier stages of her digestive health odyssey; thus far, concern over possible complications resulting from gastrointestinal surgery - which can introduce as well as reduce digestive problems - has steered her away from that path. However she did undergo hyperbaric oxygen (HBO) treatment at the Center for Wound Healing and Hyperbarics at Swedish Edmonds this spring to treat radiation enteritis, when that seemed to be the most likely diagnosis. HBO is a relatively unknown and minimally invasive treatment that appears to be effective for several conditions, and we were initially hopeful about prospects for improvement. Although she received excellent care over the course of her treatment, the lack of significant improvement in her digestive symptoms after 37 "dives" was a strong signal that radiation enteritis was not the correct diagnosis. She also underwent a course of Xifaxan (Rifaximin) antibiotic treatment for SIBO at the start of her HBO treatment, but the persistence of symptoms during that period lead us to believe that SIBO is/was not a primary factor.

Fructose malabsorption seems to be relatively unknown, at least in the U.S., and there are many aspects of the disorder that are still poorly understood. A review of studies on fructose malabsorption, most of which are based on results of hydrogen breath tests (HBTs), suggests that some level of fructose malabsorption may be present in more than a third of the "healthy" population in western countries, where high fructose corn syrup is increasingly used in popular consumer foods. HBT evidence of fructose malabsorption is present in a much larger proportion of those exhibiting symptoms associated with functional gastrointestinal disorders (FGIDs). However, there is some disagreement about the application and interpretation of HBTs, as well as the correlation between HBT results and FGID symptoms; there is also the risk of triggering severe reactions on the way to a "positive" test result, as some fructose must be ingested prior to measuring the hydrogen in the breath. In Amy's case, she has not taken an HBT, but we consider her body's positive response to a diet restricting fructose and other FODMAPS - and the negative response whenever she unintentionally eats even small amounts of high-FODMAP foods - to be strong evidence that fructose malabsorption is at or near the core of many of her digestive health problems.

Given the different tests, diagnoses and treatments Amy has undergone during this odyssey, one of the motivations behind composing this post is to share some of this experience in case it might help others who are unknowingly suffering from fructose malabsorption yet have only been tested, diagnosed or treated for other diseases or disorders. Amy is an indomitable e-patient - engaged, empowered, equipped and increasingly expert in her own medical care - and I'm hoping her journey may help inform or inspire others. If not for her perseverance, she may have undergone other, potentially more invasive or risky treatments, and might still be suffering [more] from the often debilitating symptoms.

That is not to say she is not still suffering; the source of suffering has simply shifted from severe reactions to food to severe restrictions on food. There is no known cure for fructose malabsorption, and it appears the most effective treatment is an austere low-FODMAP diet, devoid of most fruits, vegetables, grains and other sources of sugars that can feed the bad bacteria. Based on some recent negative food reactions, we suspect that Amy may also be lactose intolerant - lactose being another sugar - and so she is also currently avoiding all dairy products. Years ago, she discovered that foods high in saturated fat triggered negative reactions - her digestive health odyssey actually began decades ago - so those foods were already eliminated from her diet.

At this point, nearly all the things she most enjoys eating and drinking - including many fresh fruits and vegetables, whole grains, cheeses, chocolate, wine and beer - are now on the "avoid" list. Many activities and places that used to bring her joy - such as growing fruit and vegetables in her garden, exploring farmers' markets, trying new restaurants - are now also on an "avoid" list, serving as depressing reminders of the life she enjoyed until recently. As one among many examples, the strawberries in her garden [shown in the photo at the right] recently achieved optimal ripeness and were ready for harvest, and although they are a generally "safe" food in the low-FODMAP diet, she had a negative reaction to eating a store-bought strawberry a few weeks ago, and so she could only pick but not eat them. One of the many puzzling dimensions of this disorder is why she can no longer tolerate so many nutritious foods she used to eat regularly; it's as though some kind of switch has been flipped. While we have found no evidence that fructose malabsorption is a life-threatening disorder, it is certainly proving to be a lifestyle-threatening disorder, and the psychological adjustments are at least as challenging as the physical ones.

The good news is that after six weeks on the diet, many of her physical symptoms have been greatly alleviated; the bad news is that many of the generally "safe" foods she has tried to re-introduce so far have re-triggered negative physical - and emotional - reactions.

Margaret Mead famously observed that

Always remember that you are absolutely unique. Just like everyone else.

This individual and collective uniqueness is a significant factor for those suffering from fructose malabsorption ("FMers") and following a low-FODMAP diet, in that foods that are safe for one FMer - or even most FMers - may not be safe for another FMer (e.g., strawberries). Further complicating matters, heating (cooking) and cooling (refrigeration) affects the chemistry of foods, as does ripeness (in the case of fruits and vegetables), and so foods that may be safe in one state may not be safe in another. Foods that might be safe in isolation may not be safe when consumed soon before or after other foods that also might be safe in isolation. The set of safe foods for a given FMer can also change over time. We keep hoping it will get better, that her gut will heal and she will eventually succeed in reintroducing some of the eliminated foods. It appears that "getting better" involves some combination of radically adjusting the diet and the associated gustatory expectations and desires, as well as managing stress through exercise and mindfulness meditation ... and practicing a great deal of patience.

Amy is currently at the most restrictive phase of the low-FODMAP diet. She has eliminated everything but fish, chicken, lean beef and pork, oatmeal, white rice, rice pasta, rice crackers, quinoa, buckwheat, banana, grapefruit, portabella mushrooms, mustard greens, Swiss chard, spinach, almond milk, an assortment of seeds, oils and nut-based butters, and decaffeinated coffee. The photo on the right shows the single shelf containing all of the non-perishable foods she can safely eat at this stage [since taking the photo, we discovered that the shallots in the bowl at the right are not low-FODMAP and have been eliminated]. We hope this is a temporary low, and she will eventually reach a stage where we will need more than one shelf to store her food.

After achieving a state of greater digestive balance in the first two weeks, Amy started experimenting with reintroducing other generally "safe" foods (e.g., blueberries), several of which have resulted in a mostly mild recurrence of symptoms. Just this week, she had an extreme bout of abdominal pain - almost on a par with the bouts that brought us to the emergency room - that, as far as we can determine, resulted from eating a few sea salt & cracked pepper flavored potato chips. We later discovered that one of the other seasonings listed in the ingredients included onion powder, which is on the low-FODMAP "avoid" list, reminding us of how diligent and vigilant we need to be about checking ingredients.

Due to the cumulative effects of unabsorbed sugars in the gut, low-FODMAPpers are advised to wait 72 hours between experiments, so as to be able to correctly assess the credit (or blame) for any symptom recurrence. Another recent failed experiment occurred after eating 1/2 of a leftover baked potato (with a small amount of "safe" margarine and no skin) a few weeks ago. The next day, shortly after eating her standard breakfast of plain oatmeal, she experienced the waves of sharp abdominal pain that characterized her worst reactions. We have since learned that starch can be problematic, at least in the early phase of the diet, and that refrigerating potatoes increases their starch content. We also discovered that oatmeal contains starch, so the abdominal pain may have been triggered by an inadvertent starch overload. We hope to redo the experiment with freshly cooked potatoes, which are a generally "safe" food, during an otherwise low-starch period, in the hope that they will prove safe for her to eat again.

Amy sometimes fears that she will never be able to reintroduce eliminated (or new) foods, regain weight or acquire the nutrients - through food - that her body needs. She has been compensating for nutritional deficits through supplements including UltraClear Medical Food and calcium citrate, and has also been experimenting with the probiotic VSL#3; many supplements contain FODMAP ingredients, so she needs to be careful with those as well. Over the past 2 years, she has lost 20 pounds (9 kg) and now weighs 110 pounds (50 kg); she stands 5'8" (173 cm) tall, yielding a body mass index of 16.7, well below the "underweight" threshold of 18.5. This is particularly worrisome because none of the foods that have proved safe for her to eat [yet] are foods that can help her gain weight. Even at the worst / lowest point during her recovery from radiation and chemotherapy treatment, she weighed 117 pounds (53 kg). The lack of absorbed nutrients is likely contributing to osteopenia bordering on osteoporosis. On top of all this, her hair has also been thinning [again] throughout this time. The photo at the right was taken a little over a year ago, on the 5-year anniversary of her successful cancer treatment; little did we know then that this would represent a relatively brief crest amid the sporadically crushing waves of health challenges.

When Amy was diagnosed with anal cancer in 2005, the early stage of the diagnosis gave us confidence that there was a high probability the treatment would be successful (it was), and the side effects would eventually subside (they have). When she was diagnosed with multiple sclerosis in 1986, the long gaps between her initial exacerbations gave us hope that she would not suffer the steady and progressive deterioration that some with MS experience (she has not). The fructose malabsorption diagnosis - and low-FODMAP dietary treatment - have left her feeling more isolated and depressed than any prior health challenge. It often seems like no one - at times, including me - fully grasps the magnitude of the restrictions she may be facing, possibly for the rest of her life.

As I noted above, one reason I am writing this post is to share her (our) experience of this odyssey, in the hope that it might help others become more aware of a condition that may be widely experienced (to varying degrees) and not [yet] widely diagnosed or appropriately treated, especially in the U.S. Our hope is that we might save other sufferers some of the pain, time and money - not to mention fear, uncertainty and doubt - that we have experienced over the past several years. I plan to share more of the ongoing odyssey in future posts, similar to the "cancer counterinsurgency" series I posted during Amy's anal cancer diagnosis, treatment and recovery (which has generated more comments and email than anything I've written). We've discussed the prospect of Amy starting her own blog to catalog her journey, but for now, she is focused more on learning than sharing, as she adopts and adapts new ways to nourish and nurture herself through nutrition, exercise and stress reduction.

I'll finish off this post with a few resources that I / we have found particularly helpful:

Heidi Turner, RD, is the Medical Nutritional Therapist at Seattle Arthritis Clinic, which we first visited when Sjogren's Syndrome was a candidate diagnosis (subsequently ruled out via lip biopsy). Heidi helped us converge on the fructose malabsorption diagnosis, and she has continued working with Amy through office visits, telephone consultations and email to help her navigate to a safe, if severely restricted, baseline diet and gradually experiment with reintroducing eliminated foods. Her web site offers a number of resources to support the elimination diet (which can be applied or adjusted to support other digestive disorders).

Sue Shepherd also has a dietician practice in Australia, Shepherd Works, and has posted many resources regarding fructose malabsorption, FODMAP intolerance and other digestive disorders such as celiac disease, irritable bowel syndrome and lactose intolerance. These resources include research articles and books such as the The Low FODMAP Diet and The Food Intolerance Management Plan [unfortunately, the shipping charges from Australia may make these prohibitively expensive for some prospective American readers].

Gabor Mate's 2003 book, When The Body Says No: Understanding the Stress-Disease Connection, makes a compelling case for the the role stress plays in the onset and progression of many chronic conditions such as IBS, cancer, multiple sclerosis, arthritis, diabetes and heart diseases. The author, a practicing physician, also emphasizes the importance for doctors and other medical professionals to pay attention to patients' life stories - not just their symptoms - in their efforts to promote effective healing.

I want to emphasize that neither Amy nor I have any formal training in medicine, nutrition or biochemistry; the information shared here is based on the personal experience of a long-time sufferer and her spouse. Based on our interactions with various health care professionals over the last several years and my own reading of over 40 peer-reviewed articles in medical research journals over the last several weeks, we appear to be at the beginning stages of a very steep learning curve involving a condition - or perhaps several - that do not seem very well studied or understood. I also want to highlight the fact that we are still not sure whether fructose malabsorption is the primary diagnosis or is secondary to other conditions (such as MCAS, IBS and/or SIBO). This is why the subtitle of this post is the latest milestone - vs. diagnosis - on a digestive health odyssey ... and our epic journey continues.

While we expect - or hope - that most people will never experience the symptoms of fructose malabsorption, or the challenges of the restrictive diet used in its treatment, we also hope that those who are suffering from these symptoms - or know someone else who is - and thus may be candidates for the diagnosis and dietary treatment, might benefit from this summary of our experience thus far, and seek out personalized care and guidance from appropriately trained health care professionals.

The first regular installment of my new Social Mediator forum at ACM Interactions magazine came out in the July/August 2011 print edition last week. Dana Lewis served as guest editor for The Multidimensional Role of Social Media in Healthcare, soliciting and compiling a fabulous collection of short contributions from some of the leading voices in the Health 2.0 / e-Patient movement. When I circulated a PDF of the article among Dana and the other contributors - all of whom are pre-eminent participants on a variety of social media platforms - the response was immediate and enthusiastic: when / where / how can we share this with others?

I believe this and other articles in the Social Mediator forum will be among the subset of those made freely available on the new ACM Interactions web site, which is still under construction. Meanwhile, I am permitted to post a pre-print version of the article here on this blog [I will update this post with a link to the article on the ACM site once it is published there]. I hope others will benefit from pearls of participatory healthcare wisdom - and healthcare participatory wisdom - shared here by @danamlewis, @ePatientDave, @ReginaHolliday, @SeattleMamaDoc and @nickdawson:

The Multidimensional Role of Social Media in Healthcare

Dana Lewis (@danamlewis) is a leading voice and active participant in the use of social media in healthcare. As the founder and moderator of #hcsm, the fast-growing and fast-paced Sunday night healthcare chat on Twitter, she has regular interactions with a diverse network of stakeholders in the healthcare social media ecosystem, from patients to providers, from instigators to administrators. Dana kindly accepted my invitation to serve as guest editor for a Social Mediator article about the use of social media in healthcare, and promptly solicited the engagement of other participant-leaders - who spark conversations on #hcsm and elsewhere - representing several key dimensions of this growing movement. [Joe McCarthy (@gumption), Social Mediator forum editor]

Can a hashtag change healthcare? In our world, it can. Gone are the days of healthcare being ten years behind the technological curve. Now, individuals and organizations are meeting up online and using these tools to make a difference in healthcare. In some cases, like “e-Patient Dave” deBronkart's, the difference is choice rather than consent: The choices he learned about via social media can empower patients to beat his type of cancer. Technologies such as electronic health records were not available to help artist and patient advocate Regina Holliday’s husband beat his cancer; she has since taken up paintbrush and keyboard to write on walls – online and offline – to share her healthcare story and advocate for change. Innovative physicians like Dr. Wendy Sue Swanson feel obligated to use these new social technologies to connect in new ways with patients, and hospital community engagement director Nick Dawson says the Health 2.0 evolution has grown from 1.0 (or 101) to graduate studies in social health, as social media is embraced across all parts of healthcare.

The Coming Revolution in Patient Power: Choice, Not Consent

By e-Patient Dave deBronkart

We’re at the beginning of a revolution: the switch from informed consent to informed choice in medical decisions. Social media is playing a vital role in this transformation.

I’m alive and healthy because of great doctors: diagnosed with advanced kidney cancer, I got care from a great oncologist, great surgeon, great orthopedist (when the cancer broke my leg), and a great primary care physician. Their approach is choice: “Here’s the situation. There are three things we could do, and they all have tradeoffs, so the right choice really comes down to your preference.”

But forty years of research reviewed in the book Tracking Medicine, by Jack Wennberg, MD, have shown that although most medical decisions have more than one option, often the patient is simply given a consent form to sign, sometimes while en route to the operating room. That’s “consent” (supposedly informed), not choice.

The databases Wennberg analyzed show an amazing pattern of “practice variation”: your probability of having many types of treatment depends on unscientific factors. Often it’s customs of local doctors: “I just don’t believe in doing it that way – I think it’s better this way,” sometimes with no evidence. Your odds of getting a treatment may depend on how much of it is available in your neighborhood.

And most doctors have no idea they’re doing it. They may honestly think they’re just practicing good medicine.

The impact on us is risk: every hospitalization carries risk of harm or death. That doesn’t mean stay out; it means don’t take the risk until you’ve assessed your options.

What’s the remedy? Mine was social media: an online patient network. My doctor recommended the Association of Cancer Online Resources (ACOR), a multi-channel participatory platform including email distribution lists, wikis and other online resources for physicians, patients and others dealing with cancer.

ACOR members told me there’s only one treatment for my disease that approximates a cure (HDIL-2) – and most patients are never told about it. Why? Because it usually doesn’t work, most hospitals don’t offer it, and most physicians don’t know the latest about it, so they may think it’s not worth even suggesting to us. Considering it’s the only thing that had a chance of curing me, don’t you think I should decide that?

That’s what I mean about choice. Since all options have tradeoffs, won’t you want to choose? If we don’t ask, we may have no say in how the options are prioritized. Healthcare social media platforms like ACOR help expand our awareness of the range of options that may be available to us.

The good news is that patients and policy people are waking up. Last December a global seminar convened in Salzburg, Austria, and in March published the “Salzburg Statement”, a declaration of principles that starts: “We call on clinicians to recognize that they have an ethical imperative to share important decisions with patients.”

Until that’s a cultural reality in the traditional medical establishment, which may take a full generation, our best option is to inform ourselves, by talking to people who’ve been down that road before – fellow patients. And by far the best way to find fellow travelers is social media.

Occasionally, I am asked why I decided to write my outrage on a wall. I respond “Which wall? The wall at the gas station or are we talking about my Facebook page?”

On May 27th, 2009, I attended my first Health 2.0 meet-up hosted by Christine Kraft. At that point, I did not know the term Health 2.0. I left my husband’s side for 5 hours while he was in hospice. I sat in a room filled with thought leaders from the movement and proposed I would paint a mural depicting my husband’s medical chart. This mural would combine my husband’s personal medical information with the open format design of a nutrition facts label, and would do so on a wall in Pumpernickels Deli for all of our neighbors to see. The group was amazingly supportive. They would help me to channel my vision for the next large mural, 73 Cents, a painting that depicts our family’s horrific medical journey and lack of information access prior to my husband’s death. Due to a large social media following as well as local news coverage, the image of the painting was broadcast throughout the world, inspiring advocates for patients to this day.

In the following months, I continued to blog, tweet and post about patient rights. And fell more deeply into the embrace of the Health 2.0 movement. I loved the participatory tone of Health 2.0 chats. I rejoiced in the openly disruptive comments often posted by people who were re-shaping the health system without institutional permission.

I don’t know if healthcare strategist Matthew Holt and other Health 2.0 friends consider themselves ‘street’. The Health 2.0 movement has much in common with the street art movement. The innovators in health data often side-step traditional institutional hierarchy in their attempt to create better medical care. Using a loose organizational structure supported by the tools of social media, these innovative thinkers post their work on comment fields in online patient communities as well as insider publications within the field of medicine. Their ‘codeathons’ mimic in participation and intensity the energy of a well-attended flash mob. The frequent rise and fall of tech start-ups within the Heath 2.0 community, while regrettable, reminds me of the ephemeral stencil art of the gritty street. Their very existence creates and fuels a “tag” and that tag leads to a movement.

I am amazed and honored that I am a part of the world of Health 2.0. I gladly set up my easel and paint on city streets images of data streams and HCAHPS scores, as tides of people pass around me. I may be here today and gone tomorrow, but because of the free access nature of social media, my work in art and medicine can always be seen in the cloud.

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Regina Holliday (@ReginaHolliday) is a DC-based patient rights artist and advocate. She is currently at work on a series of paintings depicting the need for clarity and transparency in medical records. She is an avid blogger and writes Regina Holliday’s Medical Advocacy Blog.

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An Online Obligation

By Wendy Sue Swanson, MD, MBe, FAAP

I firmly believe I have an obligation to share my expertise and my experiences in understanding pediatrics online. As a doctor, technology simply makes it easier. Medicine is far from static; being online allows me to share what I learn every week with my patients. Parents/patients are online far more than they are in my office, so instead of only exchanging ideas when they gown-up in exam room #4, I can join them where they already are: in social networks, on the internet, on their smart phones, and on YouTube. Sharing expertise online is an efficient format to inform thousands at once, perpetually.

I also firmly understand that we patients want intimate, personal, responsive, and empathetic care from our doctors. All medicine can’t be practiced online. With technology and new media we physician-patient dyads are no longer constrained to the exam room as our only educational space. Acknowledging those truths, I’ve found a better balance: I work part time in a clinic seeing patients in a traditional model, and part time using tools like Twitter, my blog and YouTube to share what I know. Or what I’m learning.

In my mind, it’s clean and clear how technology builds a bond between my patients and me. This isn’t one-sided; rather it’s bi-directional. I feel more connected with science, with my mission in curing children of illness, and with my patients via social media. I give lots to technology. I get and learn far more in return. I suspect my patients would also echo this sentiment. And for clarity, there are two essential elements that technology provides in my world as a pediatrician, mom, wife, and community member:

Sharing. I share thoughts on new research, new opinions, and new trends in parenting and pediatrics. I share my stumbles as a parent myself. Physicians share opinions every day; sharing online is arguably no different. Families in my practice (and others outside of it) can follow my online content year round and have access to what I think about new research or controversial parenting topics.

Education. I’m an educator by profession (pediatrician, previous middle-school teacher, and mom). Innovations like Google Body allow me to use advancing technologies to demonstrate, teach, and inform families why their child is ill, in pain, or how they’ll heal. I often send parents to my blog as it offers comprehensive detail regarding the rationale behind my recommendations. For example, why do I suggest no Tylenol before shots? Why do I think it’s essential to keep children rear-facing in the car seat until they’re 2 years old? In the 15-20 minute visit I’m allowed in practice, there simply won’t be time to review all we want.

My blog serves as a repository of my advice and where I think science holds answers to assist us in making great decisions for our children.

For students, spring is more than warmer weather. At this time of year, students are focused on a school year ending, another notch on their belts, leveling up. What’s next? Freshmen, wise with the accumulated wisdom of two semesters, become sophomores. Sophomores move off campus. Juniors are busy contemplating internships. Like students in spring, many individuals and organizations involved in healthcare are finishing up their freshmen or sophomore years of using social media. In the past few years, there has been a movement in the industry around the adoption of these social tools to change how providers connect with patients, other caregivers and employees. The way they are using social media differs almost as much as sophomores picking their varying majors.

According to Ed Bennett’s Hospital Social Network List, over 900 hospitals in the United States are using some form of social media. There are YouTube channels, Twitter accounts, Facebook pages, blogs and more. He also links to lists of social media sites from Canada, Europe, and Australia. According to Bennett’s data, the hospitals on his list include some of the most recognized names in healthcare. It’s hard to imagine they were once freshmen.

In the early days of social media adoption in healthcare, it was about claiming your spot, top bunk or bottom. Which dorm was cooler, Facebook or Twitter? There were more questions than answers. Is it ok to engage with a patient on Twitter, or is that a HIPAA violation? Should something as serious as healthcare appear on the same site where kids are posting pictures from last night’s party? These were heavy questions as a freshman early adopter.

Fast forward a few months and those early questions gave way to success stories. Patients began finding and talking to doctors online; they discovered new resources to enable them to more effectively participate in their own care. Support groups formed online. Savvy healthcare providers stopped talking at patients through marketing and began engaging more authentically with them.

In January 2011, a cornerstone of the healthcare social media movement, the Sunday night #HCSM twitter chat, turned two years old. Our original freshmen are all grown up. Without a doubt, this moment is an exciting time to watch healthcare social media evolve as providers move away from discussions about which platform is best; beyond ROI 101 and HIPAA 102. The upperclassmen of the industry are exploring how to use social tools to impact the health and wellness of patients in more effective ways.

In late 2010, Mayo Clinic launched their Center for Social Health, a consortium of industry thought leaders and early adopters. The Cleveland Clinic has launched their ‘Lets Move It’ mobile smart phone application and online campaign designed to encourage people to be active. Other enterprising health systems are looking at geolocation services to allow people to “check in” to health activities. The potential innovations are endless. The upperclassmen years ahead will lead the way to graduate studies in areas such as mobile health, disease-specific communities and improved design and integration of electronic medical record systems.

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Nick Dawson (@nickdawson) is the administrative director of Community Engagement for Bon Secours Virginia Health System in Richmond VA. In 2009 Dawson led the pilot which became Bon Secours' social media program. Today he continues to provide strategy for the system’s digital communications work, business development and “accountable care” readiness.

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As you can see, healthcare is evolving along many trajectories with the help of social media, from 1.0 to 2.0 and beyond. Stakeholders from all dimensions of the health ecosystem are embracing social media to improve the quality of care that patients have access to. Perhaps most importantly, we've moved from questioning the efficacy of social media in healthcare to experimenting how it can be used more effectively, and are changing healthcare as we go.

Guest editor Dana Lewis (@danamlewis) is the founder and curator of #hcsm, the fast-paced, Sunday night healthcare chat on Twitter, a movement which has grown into an international community. She is the Interactive Marketing Specialist at Swedish, a non-profit health system serving the greater Seattle area, where she develops and implements social and digital communication strategies for individuals (from physicians to the CEO), groups, and the organization overall. She started using social media after her diagnosis with type 1 diabetes in 2002 and continues to engage online to improve her own health care and advocate for patients.

I have been an admirer and supporter of Lawrence Lessig's crusade for copyright reform and promotion of remix culture for many years. In a recent talk at CERN, Lessig applied his arguments for a fairer interpretation of fair use in the arts world to opening up the architectures for knowledge access in the world of science. The Harvard Law School professor made a compelling case for the ethical obligation of scientists [at least those in academia] to provide universal access to the knowledge they discover, and chastised those who practice exclusivity - those who choose elite-nment over enlightenment - as "wrong".

I rarely take the time to watch any videos, and having seen many of Lessig's talks about copyright reform - live and online - I was preparing to simply retweet the link, and move on. But having been thoroughly irritated by a personal encounter with barriers to knowledge access during the [free] webcast from the otherwise enlightening and engaging Behavioral Informatics for Health event earlier this week, I was motivated to see and hear what Lessig had to show and tell. I was excited to discover that Lessig's talk was far more relevant to health and medicine - and the kind of universal access to crucial information that might help those outside of elite schools and hospitals better achieve positive health outcomes - than I initially anticipated.

Before sharing some of Lessig's insights and observations, I want to share the source of my personal irritation in encountering preventative measures erected to limit access to one of the two journals being showcased at the behavioral informatics event, a special issue on Cyberinfrastructure for Consumer Health from the American Journal of Preventative Medicine. When I investigated options for accessing some of the interesting articles being mentioned during the event, I discovered that

THIS SITE DOES NOT SUPPORT INSTITUTIONAL ACCESS

AJPM pricing options for individuals include a 12-month subscription to the journal for $277, or the purchase of individual articles for $31.50 each. The special issue being showcased at the event included 27 articles, which translates into a total cost of $850 for purchasing this one issue of the journal, whose mission is "the promotion of individual and community health".

In contast, all the articles from the inaugural issue of the other journal being showcased at the event, Translational Behavioral Medicine, are freely available online, a policy much more in alignment with its mission:

TBM is an international peer-reviewed journal that offers continuous, online-first publication. TBM's mission is to engage, inform, and catalyze dialogue between the research, practice, and policy communities about behavioral medicine. We aim to bring actionable science to practitioners and to prompt debate on policy issues that surround implementing the evidence. TBM's vision is to lead the translation of behavioral science findings to improve patient and population outcomes.

I hope to post another blog entry with some notes from the behavioral informatics event, but in this post, I want to continue on with some of Lessig's commentary about science, knowledge, access and elitism. I'll embed a copy of the video below, follow it with some notes and partial transcriptions I made while watching, and finish off with a brief riff on science as a remix culture.

Lessig begins by talking about two motivations for his talk. The first is the late Supreme Court Justice Byron White, who was considered a liberal when appointed to the court by President John Kennedy in 1962, but became progressively more conservative, as evidenced in his authoring of the majority opinion in the 1986 case of Bowers v Hardwick, which upheld the criminalization of sodomy laws, and included the following statement:

Against this background, to claim that a right to engage in such conduct [sodomy] is "deeply rooted in this Nation's history and tradition" or "implicit in the concept of ordered liberty" is, at best, facetious.

Lessig calls this the White effect:

To be liberal / progressive is always relative to a moment, and that moment changes, and too many are liberal / progressive no more.

The second, more recent, motivation was a Harvard Gazette article about Gita Gopinath, a macro-economist at Harvard who was born in India. After mentioning that Gopinath, a tenured professor, would like to have more time to read books that are not textbooks, the article concluded with the following sentence:

Still, the shelves in her new office are nearly bare, since, said Gopinath, “Everything I need is on the Internet now.”

Lessig notes:

If you're a member of the knowledge elite, then you have effectively free access to all of this information, but if you're from the rest of the world, not so much.

He goes on to observe:

The thing to recognize is that we built this world, we built this architecture for access. This flows from the deployment of copyright, but here, copyright to benefit publishers, not to enable authors. Not one of these authors gets money from copyright, not one of them wants the distribution of their articles limited, not one of them has a business model that turns upon restricting access to their work, not one of them should support this system.

As a knowledge policy, for the creators of this knowledge, this is crazy.

Lessig tells the story of his third daughter, who was diagnosed with jaundice shortly after her birth, and the concern he felt when the doctor expressed unexpected concern about possible complications. Due to his status as a Harvard professor, he had institutional access to many relevant articles in medical journals. When he calculated the cost for purchasing the 20 articles he tracked down, it would have cost $435 for someone who did not enjoy his level of elite status.

The rightsholder did not grant rights to reproduce this item in electronic media. For the missing item, see the original print version of this publication.

Rather than architecting systems to maximize access to knowledge, Lessig suggests that "we are architecting access to maximize revenue" He also shares a chart from An Open Letter to All University Presidents and Provosts Concerning Increasingly Expensive Journals by Theodore Bergstrom & R. Preston McAfee on Journal Prices by Publisher and Discipline Type that shows the cost-per-page of purchasing articles from for-profit journals was 5 times higher, on average, than the cost in not-for-profit journals, leading him to wonder whether academia is creating it's own RIAA:

Really Important Academic Archive: RIAA for the Academy?

Lessig is co-founder of the Science Commons, a translation of the Creative Commons license to promote open access in the scientific community, with four key principles:

Having recently read a critique of Science 2.0, cataloging the shortcomings and/or failures of several traditional for-profit publishers to effectively capitalize on the Web 2.0 platform, it is encouraging to see some promising progress in sharing knowledge about chronic conditions in the not-for-profit world.

Lessig proceeds to review some of the issues surrounding the use - and misuse - of copyright in the arts, but I have already written about many of his arguments and examples from that domain in my notes from his keynote at the 2009 Seattle Green Festival. I'll simply note that in viewing his examples in this context, I was struck by the revelation that on a very basic level,

science is a remix culture

Traditionally, much of science has been the exclusive domain of professional scientists, who typically go to great lengths to cite prior work that is related to the experiments and results they report in peer-reviewed publications (indeed, some of the peers reviewing work submitted for publication are among those who are - or [feel they] should be - cited). With the rare exceptions of paradigm shifts, most of science is incremental in nature, and each increment represents a remix with a few added ingredients.

Lessig laments the current system in which authors - and peer reviewers - of scientific publications do much of the work for free, while for-profit publishers derive nearly of the financial benefits, and do so through restricting access to the knowledge produced by the authors. Given that much of the data used in the experiments reported in professional medical publications comes from patients (the PatientsLikeMe and TuDiabetes studies being particularly notable examples), it makes all the more sense to make the results of these experiments available to all patients ... and at some point, we all are - or will be - patients who might benefit from universal access to this knowledge.

I've become increasingly aware of - and inspired by - the ways that social media is enabling platform thinking, de-bureaucratization and a redistribution of agency in the realm of health care. Blogs, Twitter and other online forums are helping a growing number of patients - who have traditionally suffered in silence - find their voices, connect with other patients (and health care providers) and discover or co-create new solutions to their ills. In my view, this is one of the most exciting and promising areas of computer supported cooperative work (CSCW), and in my role as Publicity Co-chair for ACM CSCW 2012 (February 11-15, Seattle) I am hoping to promote greater participation - in the conference - among the researchers, designers, developers, practitioners and other innovators who are utilizing social media and other computing technologies for communication, cooperation, coordination and/or confrontation with various stakeholders in the health care ecosystem.

Dana Lewis, the founder and curator of the fast-paced, weekly Twitter chats on health care in social media (#hcsm, Sundays at 6-7pm PST), recently served as guest editor for an upcoming article on social media in health care for the new Social Mediator forum in ACM Interactions magazine. The article - which will appear in the July/August 2011 issue - weaves together insights and experiences from some of the leading voices in the use of social media in health care: cancer survivor, author and speaker "ePatient Dave" deBronkart promotes the use of technology for enabling shared decision-making by patients and providers; patient rights artist and advocate Regina Holliday shares her story of how social media tools are enabling her to channel her anger with a medical bureaucracy that hindered her late husband's access to vital information in his battle with cancer by writing on walls, online and offline; pediatrician Wendy Sue Swanson describes how she uses her SeattleMamaDoc blog for both teaching and learning in her practice of medicine; health care administrator Nick Dawson invokes the analogy of school in offering his perspective on the evolution of social media in health care, as it matures from freshman-level to graduate studies.

In my social media sojourns, I've encountered many other inspiring examples of people, programs and platforms that are being used to empower patients to connect more effectively with information and potential solutions:

Susannah Fox and her work at the Pew Research Center at the intersection of technology and health care

Gilles Frydman, founder of ACOR.org, the Association of Cancer Online Resources, where ePatient Dave discovered a path that led to his cancer cure

Ted Eytan, a family physician who promotes patient-centered health care on his blog and in his offline practice

It is important to note that health care has been an area of focus for CSCW in the past. For example, there was a CSCW 2011 sesssion on health care, and other papers on health care were presented in other sessions:

My primary goal in this particular post is to increase awareness and broaden the level of participation among people designing, using and studying social media in health care. My most immediate goal is to alert prospective authors about the upcoming deadline for Papers and Notes - June 3 - which has been moved earlier this year to incorporate a revision & resubmission phase in the review process, which was partly designed to accommodate the shepherding of promising submissions by authors outside of the traditional CSCW community who have valuable insights and experiences to share.

At some later phase, I'll start instigating, connecting & evangelizing other channels of potential participation, such as posters, workshops, panels, videos, demonstrations, CSCW Horizon (a category specially designated for non-traditional CSCW) and the doctoral colloquium. For now, I would welcome any help in spreading the word about the conference - and its relevance - to the health care social media community.

A sequence of encounters with various models, studies and other representations of knowledge lately prompted me to reflect on both the inherent limitations and the potential uses of these knowledge representations ... and the problems that ensue when people don't fully appreciate either their limitations or applications ... or the inherent value of being wrong.

Daniel Hawes, an Economics Ph.D. student at the University of Minnesota, analyzed the Science Secret for Happy Marriages, examining a study correlating comparative attractiveness of spouses and the happiness of marriages. He notes that many reports of the "result" - the prettier a wife in comparison to her husband the happier the marriage - did not note the homogeneity of the population, particularly the early stage of marriage for most subjects in the study, the lack of control for inter-rater variability in measuring attractiveness and happiness, or the potential influences of variables beyond attractiveness and happiness. These limitations were reported in the original study, but not in subsequent re-reports, leading Hawes to reference a very funny PHD Comics parody of The Science News Cycle and conclude with the rather tongue-in-cheek disclaimer:

This blog post was sponsored by B.A.D.M.S (Bloggers against Data and Methods Sections) in honor of everybody who thinks (science) blogs should limit themselves to reporting correlations (and catchy post titles).

A while later, in a blog post about his Hyptertext 2010 keynote on Model-Driven Research in Social Computing, former University of Minnesota Computer Science Ph.D. student and current PARC Area Manager and Principal Scientist Ed Chi offered a taxonomy of models - descriptive, explanatory, predictive, prescriptive and generative - and an iterative 4-step methodology for creating and applying models in social computing research - characterization, modeling, prototyping and evaluation. Most relevant in the context of this post, he riffed on an observation attributed to George Box

all models are wrong, but some are useful

All models - and studies - represent attempts to condense or simplify data, and any such transformations (or re-presentations) are always going to result in some data loss, and so are inherently wrong. But wrong models can still be useful, even - or perhaps particularly - if they simply serve to spark challenges, debate ... and further research. As an example, Ed notes how Malcolm Gladwell's "influentials theory", in which an elite few act as trend setters, was useful in prompting Duncan Watts and his colleagues to investigate further, and create an alternative model in which the connected many are responsible for trends. More on this evolution of models can be found in Clive Thompson's Fast Company article, Is the Tipping Point Toast?

Over the next few weeks, I encountered numerous other examples of wrongness, limitations, challenges and debate:

Kathryn Schulz, author of Being Wrong: Adventures in the Margin of Error, wrote an article for The Boston Globe about the bright side of wrong, in which she notes that inductive reasoning - generalizing from specifics - is one of our most powerful abilities, but it is only useful if we can recognize, admit and correct for the mistakes that are inherent to this type of reasoning.

My most significant recent encounter with wrongness, limitations and debate was via Susannah Fox, Associate Director at the Pew Internet & American Life Project and a leading voice in the Health 2.0 community, who offered a Health Geek Tip: Abstracts are ads. Read full studies when you can. She describes several examples of medical studies whose titles or abstracts may lead some people - medical experts and non-experts alike - to make incorrect assumptions and draw unwarranted conclusions.

In one case, “a prime example of the problem with some TV physician-'journalists'”, HealthNewsReview.org publisher Gary Schwitzer criticized Dr. Sanjay Gupta's proclamation that an American Society of Clinical Oncology study showed that "adding the drug Avastin to standard chemotherapy 'can slow the spread of [ovarian] cancer pretty dramatically'" as a dramatically unwarranted claim not supported by the study. I won't go into further details about this example, except to note with some irony that I had mentioned Dr. Gupta in my previous post about The "Boopsie Effect": Gender, Sexiness, Intelligence and Competence, in which he had complained that being named one of People Magazine's sexiest men had undermined his credibility ... and it appears that several people quoted in Schwitzer's blog post as well as in the comments are questioning Dr. Gupta's credibility, though I don't see any evidence that these doubts are related to his appearance.

The original pointer to the abstract came from a Washington Post blog post about "Wikipedia cancer info. passes muster", based on a study that was presented at the American Society of Clinical Oncology (ASCO). The post includes an interview with one of the study's authors, Yaacov Lawrence. I called Dr. Lawrence, and he was kind enough to fill me in on some of the details, which I then shared in a comment on Susannah's post. The study in question was presented as a poster - not a peer-reviewed journal publication - and represents an early, and rather limited, investigation into the comparative accuracy of Wikipedia and the professionally maintained database. At the end of our conversation, I promised to send him some references to other studies of the accuracy of Wikipedia, and suggested that the Health 2.0 community may be a good source of prospective participants in future studies.

In 2010 researchers at Kimmel Cancer Center, Thomas Jefferson University, compared 10 types of cancer to data from the National Cancer Institute's Physician Data Query and concluded "the Wiki resource had similar accuracy and depth to the professionally edited database" and that "sub-analysis comparing common to uncommon cancers demonstrated no difference between the two", but that ease of readability was an issue.

And what is the reference cited for this paragraph? The abstract for the poster presented at the meeting:

So it appears we have yet another example of a limited study - that was not peer-reviewed - being used to substantiate a broader claim on the accuracy of Wikipedia articles on" Science and medicine peer reviewed data" ... in a Wikipedia article on the topic of Reliability of Wikipedia. Perhaps someone will eventually edit the entry to clarify the status of the study. In any case, I find this all rather ironic.

As with the other examples of "wrong" models and limited studies, I believe that this study has already been useful in sparking discussion and debate within the Health 2.0 community, and I'm hoping that some of the feedback from the Health 2.0 community - and perhaps other researchers who have more experience in comparative studies of Wikipedia accuracy - will lead to more research in this promising area.

[Update, 2011-03-16: I just read and highly recommend another relevant article on wrongness and medicine: Lies, Damn Lies and Medical Science, by David H. Freeman in the November 2010 edition of The Atlantic.]

Paro is a personal robot that looks like a baby harp seal and responds to changes in light, sound, temperature and touch. Research and development in artificial intelligence has traditionally focused on linguistic, logical or mathematical intelligence, although robotics has also involved the quest for imbuing machines with spatial and kinesthetic intelligence. Paro, however, seems designed more to embody emotional intelligence. And I would argue that the secret superpower of Paro is its ability to evoke emotions and address our fundamental need to be needed.

I recently heard an NPR interview with Amy Harmon about her NY Times article on Paro, A Soft Spot for Circuitry, in which recounted a number of interesting responses from Millie Lesek, an elderly woman who cared for Paro in a nursing home. Paro was first presented to Mrs. Lesek by a staff member who said she needed someone to babysit the robotic pet. Mrs. Lesek was happy to fulfill that need, forming a special bond with Paro, and eventually developed a stronger sense of being needed: “I’m the only one who can put him to sleep”.

Some researchers referenced in the article express concern about substituting a robot for a person - or a real pet - in relationships. However staff members at another retirement home noted that Paro tends to facilitate human interactions when other people are present (the way that real pets often do) rather than replace them. And when family, friends or staff are not - or cannot be - present, using a machine to evoke emotional responses and elicit a feeling of being needed seems like a powerful therapeutic tool ... with far less care and feeding required than real pets.

I've long nursed a pet theory that the primary therapeutic benefit people derive from pets is not so much that our pets love us, but that we can love our pets ... with far less fear of the rejection we risk in loving other people. That is, it's the expression or giving of love rather than the receiving of love that really opens up the heart - and promotes other emotional and physiological benefits. Reading the article about Paro, I'm inclined to revisit and revise this theory. Perhaps it's not just loving someone - human, animal or robot - that makes us feel complete, it is the [perception of] being needed by someone we love that helps us feel like we matter ... like our life has purpose.

I remember reading about a study several years ago - that I cannot track down at the moment - in which a person who was asked to do a favor tended to express closer feelings toward the person asking for the favor than the favor requester tended to express toward the favor responder. That is, I'm more likely to feel closer to you if I feel you need me.

The band Cheap Trick was also on to this back in 1977, with a somewhat less scholarly expression of this basic need:

I want you to want me. I need you to need me. I'd love you to love me. I'm beggin' you to beg me.

Returning to a more scholarly thread, the Turing Test was proposed in 1950 as a way to determine whether a machine was intelligent. The idea was to have a human interrogator in one room, and a computer and another human in another room, communicating only via written or typed questions and answers. If the interrogator was unable to differentiate which respondent was the machine and which was the human, the machine would be said to have achieved human-level artificial intelligence.

Paro, however, represents an attempt to achieve embodied intelligence, which could not, by definition, be tested using a scheme in which the machine is isolated from the human interrogator. It is clear from Harmon's article that many of the people who interact with Paro do not believe that Paro is a real baby seal, and I don't know whether they would ascribe much logical intelligence to it, but I do suspect, based on the responses elicited from many of those who interact with it, that it is well on its way to demonstrating significant emotional intelligence.